So life has a way of humbling you. Last night Summer has a bad headache. She was in so much pain she broke down finally asked to go to the hospital. I had only been home for an hour. She hadn’t taken her meds, she just broke down. I lost it… panicking flashing back to all those nights being at UVA. Them really doing nothing for her. Ughh… she has been going soo well… Headaches are increasing this year however, but have still been manageable.

I gave her her meds, ice pack, tried to calm her down. I could tell the pain had started to take a toll on her and she had started to panic. That had increased the pain. Checked back in on her by 11pm she had settled down fallen asleep.

We have been dealing with this since she was 2 years old. I watch her… go through these episodes of pain and instability… then she gets stable, adjusting back to life then out of nowhere…. it’s like having the rug pulled from underneath you. Making you fall to the ground turning the room upside down.

I am getting better at breathing my way through those moments…. but they do not get easier to be honest. Truth be told … there is nothing more gut wrenching then watching your child double over in pain unable to help…
It’s the most helpless feeling in the world.